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Old 01-05-2012, 10:37 AM   #1
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Simponi shots...

Hello everybody!

I wish New Year finds you in better health and good spirits! Wishing you all the best!

I have a question. Is anyone here been on Simponi?
I been on practically all TNF's, Simponi is the last one I never tried.
I just wonder if anyone experienced terrible nausea after starting this treatment?

Thank you much
Moldova

 
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Old 01-05-2012, 10:54 AM   #2
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Re: Simponi shots...

Hi my friend...how are you? don't you like the "mild" winter so far? I love the lack of snow! We had enough in October!

I haven't been on Simponi so I'll leave that to someone else. Still on Orencia but I'm actually off of it. Have some bad back problems and am anticipating surgery fairly soon so my doc is holding my Orencia pending a surgical date. More neck problems too. May need surgery on both. But so far so good on the RA flares.

Any more news on you maybe having lupus? Or are they thinking Ra and lupus? Ra drugs don't work on lupus, I've heard.

There is another new drug coming out sometime this year and it's the first of the JAK inhibitors. And it's a pill. It's a biologic but it goes after the protein that actually breaks down the joints rather than a protein to counteract the immune system factor that is out of whack....so no TNF inhibitor but it inhibits "Janus kinase"(JAK).

If Simponi doesn't help, then you've tried them all and that makes you a perfect person to get the JAK inhibitor. I imagine insurance will want us to try everything else before they allow us to get the JAK inhibitor.

Hang in there...new stuff is coming!

major hugs and love...........Jenny

 
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Old 01-05-2012, 11:29 AM   #3
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Re: Simponi shots...

Hello to my dear, old time friend Jenny,

I am so sorry you need back surgery. Sweetie, what kind back surgery? And why if I may ask? Being a sufferer and survivor of 2 major back surgeries I know what recovery means. Jenny, please keep in touch, I will be there for you since "been there, done that".

Thanks for asking: yes, I was diagnosed with RA, LUPUS and a little later with MS. So i have it all.
I had only one Simponi shot, I am so nauseous since although I did not read about this med gives people nausea. With tons of medications I am on, no wonder if my body gives such reaction. I saw my RA dr on 1/3 and she wants to see if Anti-TNFs will work for me; it called B-Cell therapy.
Its again infusion, done at the Hospital. In the beginning you have it done every other week for the fist month and than every 6 month.
I read about side effects Jenny; as much as all biologic scare me, this one is even worse. Very dangerous drug, but I am at the point where I don't walk. I am in bed for the last almost 2 month. Every cell of the body hurts to the point of screaming, opiates bring NO relieve at all.

I do need my neck surgery as well; RA "eat" all the cartridge, OA - bones and on top of this mess I have a benign tumor which needs to go since it pressures on the C levels. Neck pain gives severe headaches, cant find comfortable place even in bed. And the worst part: nothing is working to relive the pain.

I also need reconstractive surgeries on both elbows; due to RA I got tears in the muscles, ruptured ligaments and something else, dont remember from the top of my head right now.

But... my RA Dr is very against any surgery for me. Her concern is me not going in remission and this means too much inflammation in a body which may lead to NOT healing. And since immune system cant fight, it can be dangerous for me. So I was told to hold to it as long as I can. Most days of the week I agree on anything just to get rid of this pain all over the body.
I don't know if treatments you are talking about is the same one I wrote here. Is it? I will do some investigation and will talk to my doctor about it. Very disappointing after "poison" body for so long and with such dangerous drug and not even go in remission. Well, its life I guess, right?

Sweetie, Orencia worked the best for me for 8 month; nothing since worked even close to it. They have now Orencia in shot form, but for some reason I learned that insurances don't wont to cover it. Sounds strange, but my pharmacist said that many people out there pay for the whole thing out of pocket, so why insurances have to cover for others? Very strange situation.

Hugs to you and best wishes dear person,
Moldova

 
Old 01-09-2012, 03:38 PM   #4
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Re: Simponi shots...

Hi my dear friend....sorry but I came down with a bad cold last Thursday and haven't felt like posting or even reading any posts....eyes were just to swollen and watery. Starting to feel a little bit human now.

I'm not looking at anything big with my back....just an L4-5-S1 fusion to give me back some feeling in my feet. But the doc thinks I have new and bad problems developing in my neck and I may need more surgery there. I have multi-level spinal cord compression again(they fixed that 5 years ago), but he seems to think I need more extensive surgery. Still having tests for that. Already fused C3 to T1 but it was from the back so the disks are still in there and may need to all come out.

Unlike you, I am very stable right now and the 5 years of treatment for osteoporosis has made my bones very hard right now and it's a good time to do work on me so if he needs to do more spine work, I'll let him. Even my immune system seems to be working better. My primary doc and RA doc have been working with me to get me in better shape and I'm even exercising 4-5 times a week. Taking high Vit D and calcium and Vit B complex for the spine issues(helps nerves heal) and Krill oil for cholesterol and it's all working. Diabetes numbers are better, cholesterol and tryglycerides better, and my asthma is under better control than ever before. RA is doing really, really well considering I've been off Orencia and MTX for 3 months and have very minor symptoms right now. Eating tons of fruits and veggies and very little meat. Lots of nuts and seeds too. Seems to be making me feel better and sleep better.

I'm so sorry you are having such a terrible time. With both lupus and Ra, you have to take such strong meds and the same drugs don't help both diseases so you are really stuck. And with MS, the treatment for that is almost the opposite of what we need for Ra. I'm not familiar with B-cell therapy....is that for the lupus or the MS or the RA? I know some Ra is thought to be B-cell activated and there are B-cell biologics coming but not yet approved. Is this a new therapy or experimental?

The last thing you need to do is have surgery when you are so unstable. The RA doc is right....you may not heal. I've had incisions fall open up to 3 weeks after surgery and it's no fun. My father died of gangrene from a broken leg failing to heal(he was an alcoholic too). And with spines, as you know, if the bone doesn't grow and you don't fuse, you can end up in even more pain and disability. I hope for your sake, they find something that will slow down this monster of a disease.

I know there are some new pain meds coming out soon too...stronger than the current ones. I use Dilaudid and they now have that is a long acting form and I hope I get to use it with the next spine surgery. I find it works really well for me. Have you considered seeing a pain management specialist to see what's new in the pain meds world and what combination might help you? Everyone tells me that you need to have a combo of drugs for good pain relief.....long acting ones, and a short acting one for breakthrough pain. I hope I never get that bad. Maybe you'd qualify for a clinical trial with the new pain meds they are working on...ask your doc.

As for Simponi....I know nothing about it. I don't even know anyone on it. Why you got nauseous I have no idea. The deal on Orencia and shots or IV has to do with the cost. With some insurance, they cover most of the cost of the IV because it is considered an "in-patient procedure", meaning you have to have a medical professional give it to you in an office/clinic /hospital setting. So they pay more. If you get it in the new shot form, it gets paid out of your prescription drug coverage and that can mean it's very expensive. I'm on Medicare with a really, really good Medicare supplement but the drug supplement is just average. So it covers the IV Orencia 100% but if I got the shots to do at home, I'd have to pay 2/3 of the price....or about $1000/month until I finished up that "doughnut" hole and then I'd pay about$50/month...but I'd end up paying $3000-4000 a year when the IV is completely covered. When they announced the shots would be available, I went right to my doc and asked about the cost and was told that no one could be forced to go off the IV form....they knew about the cost issue....especially with Medicare. So when I re-start, it will be the IV form again.

You take care of yourself and I will let you know when I have surgery and what kind(having knee issues too). Winter should get here sooner or later....later is fine with me! Good time to get surgery done so I can enjoy the summer months.

Take care and gentle, gentle hugs..............Jen

 
Old 01-10-2012, 10:56 AM   #5
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Re: Simponi shots...

Gosh sweetie,
I am so sorry to hear that on top of all the issues, you got sick with cold. Just be careful; I know you smart and know what is what and how to take care of yourself, but when you have so many health issues, one cant be careful enough...

Yes, this is a new biologics, it called Anti- TNFs, B-cell therapy.
No, its not experimental, they do this relatively new treatment for a while at HSS in NYC. This is also IV infusions given at the hospital, once in 6 month. People who dont go in remission with TNF, they can try the B-therapy. I pray it will help. Right now they work on my insurance coverage. Medicare would pay for the drug, but they have nothing to do with coverage of the hospital bills. So strange; when I was on Orencia, everything was covered 100% by my Medicare and supplemental BCBS (great coverage PPO) but they wouldn't cover treatments done in the the hospital. My supplemental covers the hospital bills for this particular treatment but 20% only.

So my RA told me to try to ask hospital for financial aid to help with coverage. Such pain in a neck; I have 2 great health insurances, pay for them an arm and a leg and now, when you need it so bad - they cover this, but not covering that. Go figure.

Jenny,
the fusion surgery you have on your lower back, you said it will be fusion. Will he use also instrumentation (titanium hardware: rods, screws, etc)? Will this be 360 degrees or just L-4, L-5, S-1? Best of luck to you sweet heart. Be ready for at least of one year recovery. And I pray for good results for you. Recovery is not a walk in a park, but I know you strong girl and you can do it.

Simponi is a new drug, my RA has her patients on it with variable results like with any other treatments. I was very nauseous first week, but I also was very weak and in too much pain.
Today I am feeling better on it, at least I can eat.

I am under Pain mgmt care since 2006, since my first spinal fusion. He is also in NYC and I must see him every month to get my Rx from him and just talk. He is also an Anesthesiologist; my spinal surgeon recommended me to him saying that it very important your PM Dr to be an Anesthesiologist as well, they know all meds, pain meds included from inside out. He tries so hard to help me with my spinal/damaged nerves pain. He said that no such thing, one medication for everyone, all his patients on their own "coctail". Whatever soothes their particular needs.
And yes, people who tell you this, right. People with CP have to be on a medication not just when pain accures, it has to be around the clock care. For example, some of my meds are LA (long acting) and it taken every 6 hours; the other one is a BT (break through) and it taken when you feel most pain.

I wish I wouldn't have such high tolerance tough. I been on most of pain meds, patches included, shots and IVs included, and in no time they stop working on me due to tolerance. So he has to change, switch, etc them again. I am not an easy patient of his.

I heard about new/pure pain meds; I will see him soon and will discuss this new form of PK. I wish I didn't have to take them, they cause such side effects, they cost so much money, and just the thought of taking such powerful drugs makes me think what future brings if you know what I mean.

When is your surgery? Please, let me know that I can pray for my friend...
Hugs and best wishes to you
Moldova

 
Old 02-06-2012, 10:55 PM   #6
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Re: Simponi shots...

Quote:
Originally Posted by Moldova View Post
Hello everybody!

I wish New Year finds you in better health and good spirits! Wishing you all the best!

I have a question. Is anyone here been on Simponi?
I been on practically all TNF's, Simponi is the last one I never tried.
I just wonder if anyone experienced terrible nausea after starting this treatment?

Thank you much
Moldova
I have been taking Simponi for 6 months, my Dr. JUST took me off of it due to lab results and it wasn't working very well for me anyway. I have noticed a bit of nausea for several days after the shot, but for me it was nothing compared to methotrexate That medication did not agree with me.

 
Old 02-06-2012, 11:05 PM   #7
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Re: Simponi shots...

Hi Auto thank you for the reply

I was on MTX as well and was so sick since this is chemo therapy. I lost weight was ill and finally my Dr took me off it.
This coming Thursday I go on Rituxan 7 hr IV infusion. My RA decided to go with me on Anti TNF biologics since I couldnt go in remission despite trying all of the TNF and except Orencia IV nothing worked and it only lasted for 8 month.
What is wrong with your labs? I got blood work back with Hepatitis B anti bodies. I have no clue why and when I got it but she said it needs to be watched very close since all immune suppressant my make them active and I may get full blown Hepatitis, I feel no win situation no matter how hard we try/
Best of luck to you dear
Moldova

 
Old 02-06-2012, 11:48 PM   #8
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Re: Simponi shots...

Quote:
Originally Posted by Moldova View Post
Hi Auto thank you for the reply

I was on MTX as well and was so sick since this is chemo therapy. I lost weight was ill and finally my Dr took me off it.
This coming Thursday I go on Rituxan 7 hr IV infusion. My RA decided to go with me on Anti TNF biologics since I couldnt go in remission despite trying all of the TNF and except Orencia IV nothing worked and it only lasted for 8 month.
What is wrong with your labs? I got blood work back with Hepatitis B anti bodies. I have no clue why and when I got it but she said it needs to be watched very close since all immune suppressant my make them active and I may get full blown Hepatitis, I feel no win situation no matter how hard we try/
Best of luck to you dear
Moldova
I have a very low neutrophil level, very high lymph. I guess very high risk of infection. I asked if it was due to the simponi and the rheumy said it could be since I didn't have this before starting it. So going off of it for a month, retaking the labs in 2 weeks, hopefully they improve and he will need to come up with a different treatment plan. Failed plaquenil, methotrexate, now simponi. I say I gave it my best shot, I'm done
So are you actually being admitted for your infusion or is it like an ambulatory infusion center? Are you basically stuck in a chair for most of that time? That sounds rough! Good luck.

 
Old 02-07-2012, 11:46 AM   #9
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Re: Simponi shots...

Honey, first of all, I have to admit: very tough. Most biologics, RA treatments in general, either don't work and you don't go in remission or after short time - plateau and it stops working.
But I do know people, older than I am, with already very damaged hands, who is on Ebrel and MTX for 10 years and it working wonders on her. I have been on each of the medicines they have up there for RA patients and now I go opposite way: b-cell therapy. No guarantees at all; in fact side effects scare me to death. I go in 2 days at Hospital for Special surgeries in NYC, they do it in Hospital facilities, all nurses right there, doctors as well. And yes, will not be easy with damaged spine to lay for all this 8 grooving hours. They let you get up for short time only to reach the lady's room, they feed you and give you coffee and soft drinks. Most people read, watch TV which each bed has, or sleep due to anti-histamines

If something goes wrong, according to my RA Dr who works there, they each bed/reclining chair has its own "surviving" kit: oxygen, masks, ER supplies and machines. So I pray and hope for the best. The scariest thing is at home, since they say first treatment and first 24 hr after is very dangerous. I live in NJ, but my GP knows what I go for and told me to call him 24/7 if I need help.

I cant comprehend one thing though, after each shot of any of these drugs, i am very ill: low grade fevers with chills, sore throat, very weak and impossible to live normal life. I don't know what is worse. I had once terrible scare also. I had my blood work done at 8, by 10 am we went to the Mall to buy a present for someone and i get phone call from my doctor to get immediately to bed, and repeat blood work in a week. My levels were so low, it showed i may loose blood internally. Everything was really screwed up and they were really worry. I repeated in 2 weeks and levels got better. this all us due to treatments.
While on IV Orencia infusion I met a young guy, who is on same infusion. I asked him if he feels the difference and if this helps him. He tells me his story and I am amazed to hear something like this. We all know biologic can trigger cancer, etc. This young man was on Orencia, than gets Lymphoma due to treatments, had to take a year off to go on chemo and cancer treatment and now he is back on Orencia.
I asked myself if I would go back to biologics and not sure I would. I just wonder sometimes...
If I would be a mild case or RA, if I wouldn't' have all these damages already, I probably wouldn't do much about it. In my case my RA tells me that treatment will prolong my life. I hope...

All the best to you
Moldova

 
Old 02-20-2012, 09:37 PM   #10
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Re: Simponi shots...

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Originally Posted by Auto1 View Post
I have been taking Simponi for 6 months, my Dr. JUST took me off of it due to lab results and it wasn't working very well for me anyway. I have noticed a bit of nausea for several days after the shot, but for me it was nothing compared to methotrexate That medication did not agree with me.
MTX didn't agree with me either! I couldn't eat with it at all, and lost 15lbs in less than two months(I was on it for around 6 months, but it didn't have any effect for a while then suddenly it started making me very sick), which is bad considering I was underweight before the MTX. My mother-in-law described it best when she said it feels like morning sickness, anything and everything made me queasy, especially smells!

I was on Simponi for 2 months, but I think it aggrevated my arthritis if it did anything at all. After the initial shot I didn't feel nauseous, but I did feel very faint, and I almost passed out once. The reason I said I think it aggrevated my arthritis is because before I went on it, my arthritis had hit a plateau of activity that was being maintained by my prednisone. After my first shot of Simponi my arthritis became extremely active in a brand new joint that had never been affected before, and I developed severe tendonitis in my hand which made my tendon so swollen it was as big as my finger! I got a cortisone shot in my joint and tendon which made my hand feel good....Until the next shot which made my ok-feeling wrist turn into a swollen mass of heat and pain the day after the injection.
I'm having a hard time with these meds and the only thing that's managing my arthritis right now is prednisone.

Thanks for mentioning the JAK inhibitors jennybyc, I'm going to talk to my Rhuemy about them next appointment!

 
Old 02-21-2012, 07:26 AM   #11
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Re: Simponi shots...

Thank you for all replays and sharing about your experiences.

I was on Simponi very short time; than I was switched to Rituxan 7 hr IV infusions. I had never in my life had such reaction. When I read about side effects (fatal as well) I was scared, but like everyone else thought it will not happen to me, I am strong.
2 hr into infusion, i developed severe reaction. Stuff in this infusion Hospital stay, were prepared and in couple seconds were helping me with it. At first it was very painful itch, in seconds I developed huge hives and blisters from head to toe. I was watching them covering every inch of my body.
Burning was so bad, that after applying ice all over, i still felt on fire.
Doctors and nurses were excellent, they really know their job in critical situations.
Now I have to be 100% Rituxan free before I can go on another chemo therapy treatment. They all very strong, but not all of them have such severe side effects like Rituxan. Obviously, I will never go on this drug again. And hope something else is finally will work.
I wish you all best results with your treatments!!

Moldova

 
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